1
40
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Dublin Core
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Title
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January 2018 List
Text
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January 2018 List
URL Address
<a href="http://doi.org/10.1002/ppul.23840" target="_blank" rel="noreferrer">http://doi.org/10.1002/ppul.23840</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Advanced care planning in cystic fibrosis
Publisher
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Pediatric Pulmonology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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cystic fibrosis; 7782-44-7 (oxygen); chest tube; Child; Clinical Article; comfort; durable power of attorney; Female; Forced Expiratory Volume; hemoptysis; Hospitalization; Human; lifespan; living will; Male; outpatient; oxygen; Palliative therapy; Pilot study; pneumothorax; practice guideline; school child; thinking
Creator
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Linnemann RW; Friedman D; Altstein L; Georgiopoulos A; Islam S; Bach K; St John A; Moskowitz SM; Yonker LM
Description
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Background: Advanced care planning (ACP) is recommended for people with cystic fibrosis (CF). To date, a CF-specific consensus statement that would help CF care teams incorporate ACP into clinical practice has not been developed. Additional research on ACP topics and preferences for optimal implementation is needed to support evidence-based incorporation into routine CF care. Objective: To assess ACP experiences and preferences among individuals with CF in order to inform future interventions aimed at improving ACP in CF. Methods: We surveyed 41 patients with CF aged >=12 years participating in a pilot study of a primary palliative care intervention (Coping, goal Assessment, and Relief from Evolving CF Symptoms [CF-CARES]). We assessed 4 domains of ACP: prior thoughts about ACP, comfort with ACP, preferences for ACP, and prior completion of ACP. We also evaluated the impact of disease severity on certain measures. Severe disease was defined as: Forced Expiratory Volume in 1 second (FEV<inf>1</inf>) <30%, >=4 CF hospitalizations in past year, ever had pneumothorax requiring chest tube placement, ever had massive hemoptysis/hemoptysis requiring hospitalization, or current home oxygen use. Results: We found that most participants worry about ACP topics: 92% worry about the impact of CF on their lifespan and 84% worry about what living with CF would be like if they were to get sicker. The majority (52%) had thought at least "somewhat" about what their important goals and wishes would be if their health situation were to worsen. Only 37% had specific wishes about the types of medical treatment they would or wouldn't want at end of life. The vast majority of participants reported feeling very comfortable talking with CF providers about ACP topics. However, only 5% reported previously talking to a CF team member about the care they would want if they became too ill to make decisions on their own. Few participants (11%) had completed a durable power of attorney for health care or living will. Participants overall preferred to have ACP discussions initiated by any member of the CF team who knows them well, during a period of stability when generally healthy but meeting a certain threshold (e.g. >=4 hospitalizations per year or FEV<inf>1</inf> <40%), and in the outpatient setting. Severe disease was not statistically associated with subjects' worry about getting sicker, comfort talking to CF providers about ACP, or setting preferences for ACP. Conclusions: Our results support the need for a consistent approach to ACP for CF patients earlier in the illness course when patients are still generally healthy. People with CF appear to worry about ACP topics, but need more support from the CF team to understand and document their ACP choices. Future guidelines on ACP in CF, as well as CF-specific ACP materials for patients, may help ensure that all individuals with CF benefit from ACP..
Identifier
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<a href="http://doi.org/10.1002/ppul.23840" target="_blank" rel="noreferrer">10.1002/ppul.23840</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
7782-44-7 (oxygen)
Altstein L
Bach K
chest tube
Child
Clinical Article
Comfort
Cystic Fibrosis
durable power of attorney
Female
Forced Expiratory Volume
Friedman D
Georgiopoulos A
hemoptysis
Hospitalization
Human
Islam S
January 2018 List
Lifespan
Linnemann RW
living will
Male
Moskowitz SM
Outpatient
oxygen
Palliative Therapy
Pediatric Pulmonology
Pilot Study
pneumothorax
Practice Guideline
School Child
St John A
thinking
Yonker LM
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
May 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2019 List
URL Address
<a href="http://doi.org/10.1002/ppul.24311" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/ppul.24311</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Effects of a primary palliative care intervention on quality of life and mental health in cystic fibrosis
Publisher
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Pediatric Pulmonology
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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quality of life; anxiety; depression; chronic symptom burden; cystic fibrosis; primary palliative care
Creator
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Friedman D; Linnemann RW; Altstein L L; Georgiopoulos AM; Islam S; Bach KT; St John A; Fracchia MS; Neuringer I; Lapey A; Sicilian L; Moskowitz SM; Yonker LM
Identifier
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<a href="http://doi.org/10.1002/ppul.24311" target="_blank" rel="noreferrer noopener">10.1002/ppul.24311</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Description
An account of the resource
BACKGROUND: Despite the significant impact of chronic symptoms on quality of life with cystic fibrosis (CF), the role of palliative care in management of this disease is not well defined. The coping, goal assessment, and relief from evolving CF symptoms (CF-CARES) model is a primary palliative care intervention designed to provide chronic symptom management at all stages of the disease. The goal of this pilot study was to estimate the effectiveness of the CF-CARES intervention on improving chronic symptoms and quality of life for people living with CF. METHODS: A structured assessment was used to guide referral to supportive services intended to address burdensome symptoms. Follow-up assessments were performed approximately 3 and 6 months later. Longitudinal regression analyses of changes in symptoms and quality of life were performed for all participants regardless of utilization of supportive services. Subgroup analyses were performed for subjects participating in mental health and alternative health services. RESULTS: Forty-one subjects completed assessment and referral processes. The mean number of CF-associated symptoms decreased over time, as did respiratory symptom-related distress and depressive symptoms. Subjects utilizing alternative health services reported less psychological distress at follow-up. Among subjects with severe disease, mental health, and quality of life improved, especially for those using mental health services. CONCLUSIONS: The CF-CARES model resulted in significant mental health and quality-of-life benefits, suggesting the value of integrating symptom management interventions into routine CF care. Moreover, mental health services can play a key role in CF-specific primary palliative care, especially for those with advanced disease.
2019
Altstein L L
anxiety
Bach KT
chronic symptom burden
Cystic Fibrosis
Depression
Fracchia MS
Friedman D
Georgiopoulos AM
Islam S
Lapey A
Linnemann RW
May 2019 List
Moskowitz SM
Neuringer I
Pediatric Pulmonology
Primary Palliative Care
Quality Of Life
Sicilian L
St John A
Yonker LM